IT may seem like a miracle for a little girl who twice suffered heart failure due to the severity of her seizures, but nine-year-old Ava Barry, born with the rare and often fatal form of drug-resistant epilepsy known as Dravet Syndrome, has been free of hospital admissions for nearly three years.
Her mum, Vera Twomey, who made headlines with her high-profile campaign to legally access medicinal marijuana to treat her, says Ava hasn’t looked back since she replaced the cocktail of pharmaceutical drugs that were failing to control her seizures with medicinal marijuana in the form of THC and CBD oils.
“The seizures are under control, she’s walking independently, and she’s looking forward to going back to school and meeting all her friends again,” Vera says, against the background chatter of her busy household.
“She’s had no hospital admissions for almost three years, which is astonishing for someone with her diagnosis. She takes her CBD and THC once in the morning, and again at night.
“Ava’s speech is coming along, but there’s been an effect on her development from the seizures. We’re in a position where we’re working on skills now.”
It’s been a hard-fought and very public battle for Vera and her husband Paul, to reach a point where Ava can access the medicine that has seen her health make such improvements.
As a baby, Ava was prescribed a cocktail of drugs including phenobarbital and benzodiazepine to prevent her seizures, none of which worked for her.
When Vera first decided to try treating Ava with medicinal cannabis, all cannabis was illegal under the Misuse of Drugs act 1977, and only the Health Minister could grant an individual licence to a patient to access the drug for therapeutic reasons.
Today, following years of campaigning by Vera and others, compassionate access to medicinal cannabis is permitted when prescribed for a patient, but because no products are available in Ireland, Vera is still forced to travel to The Netherlands every six weeks in order to buy her daughter’s medicine.
“The compassionate access programme was announced, but Simon Harris neglected to mention that there were no products available via the programme yet,” Vera says.
“That’s very disappointing. On a practical level, a patient needs to be able to access a product to benefit from the programme. Hopefully at some point there’ll be some kind of logic reached about that as well.”
The outspoken Cork woman, who is also mother to Sophia, aged eight, Michael, aged six, and Elvera-Rae, aged four, outlines the dramatic story of the lengths she went to in her campaign for legal access to marijuana in her new book, simply titled, just published.
Twice, Vera set off to walk from her home in Aghabullogue to Leinster House in protest at the lack of action from Health Minister Simon Harris. Once, following a personal call from the Minister requesting that she give up her walk, she stopped. However, following a further delay of months during which Ava’s condition worsened, she set off a second time, reaching Dublin crippled with tendonitis for a public protest outside the Dáil.
The family eventually crowd-funded a temporary move to The Hague so that Ava could begin her combined THC/CBD treatment in a country where it was legal.
While accepting her televised Person of the Year award in 2018, she used her acceptance speech to publicly challenge Leo Varadkar, who was attending the ceremony.
She even made a symbolic attempt to import Ava’s medication illegally, to highlight how the law was failing patients in need and was made to feel “like a criminal” when met at Dublin airport by sniffer dogs.
“I was a criminal that day, but I wasn’t doing anything wrong. I was chasing something that’s real and physically effective. The attitudes and the law need to catch up in this country to help people like us.”
Vera’s grit and fighting spirit, and her dogged determination in approaching politicians who could help, were met with widespread support from the public; her voice still cracks with emotion while recalling the help of friends and neighbours.
“For every person who stood in Ava’s way, there were 100 people standing shoulder to shoulder with her, willing her to survive,” she says.
“There are a few good politicians above in Dublin, but they’re not there in great numbers. But what is there in great numbers is ordinary parents and grandparents, the people who led to Ava getting her medication, because without them we could have been ignored, but they couldn’t ignore us all.”
Approaching writing her first book with the same determination she has exhibited throughout her battle for Ava, Vera decided not to rely on ghost-writers, but to pen the tale herself. Beginning last November and writing at night after putting her children to bed, she often wrote into the small hours of the morning.
“I’d never written before and I found it difficult at times, but in other parts a pleasure to write about Ava,” she says.
“Paul was very supportive and I’m glad now that someone behind me pushed me to do it, because I think it’s a truer representation of the struggle because it was written by ourselves.
“Maybe our story is a hope for other people. You can overcome these things, and people who put obstacles in your way, but it’s just the determination that it takes feels like a super-human effort.”
Her experiences have shaken Vera’s confidence in Irish social institutions, including the medical profession and political system.
“The experience we had was devastating,” she says.
“Rather than making me cynical, though, it saddens me hugely to see that thousands of people in this country are being treated with hopeless inadequacy.”
Most parents want to put their faith in what doctors tell them, but Vera says that she and Paul still wonder what would have happened to Ava if they hadn’t questioned her treatment and looked for alternatives themselves; up to 20% of Dravet Syndrome sufferers die in childhood, and in the opening chapters of the book, Vera outlines what doctors said Ava’s prognosis was; that she would never walk or talk, and that she may not survive to see her third birthday.
“We think about that all the time, and we know we did the right thing, to fight for her and for options for her,” Vera says.
“But it’s an indictment of the system in this country that one has to fight. One shouldn’t have to fight for proper care for your sick child.”
Does she think her fighting spirit is in any way connected to coming from a strong community in the Rebel County? Vera laughs: “I couldn’t disagree with that. If I’m a rebel, I’m very proud to be.”
Now preparing herself for a book tour that will take in Belfast, Galway, Limerick and Wexford in coming weeks, Vera says she hopes her book will not only live on as a record for her own children to read when they grow up, but also for parents facing similar situations: as far as the Barrys are concerned, medicinal cannabis works, and the message needs to be spread.
“Paul and I would like this to give hope and information to other parents,” Vera says. “Medicinal cannabis is a true, genuine, wholesome medication and no matter how long it takes for the medical establishment and the politicians to accept this, it is going to happen because the medicine is too powerful, gentle and effective to be ignored.
“I just wish my little girl could have had it so much earlier. But if it saves another child hundreds and hundreds of seizures, like it has done my daughter, the book is something to be proud of.”
For Ava is published by Mercier Press and is available now.